Blood cancer is often described as the hidden cancer. Despite being the UK’s third biggest cancer killer and fifth most common cancer, blood cancer doesn’t have the same public profile as the other common cancers. We wanted to interrogate what was causing this lack of awareness, and what impact overcoming this hurdle could unlock for the blood cancer community.  

Our survey, which reached 2,571 people in the blood cancer community showed that, 91% of people affected by blood cancer believe the community would benefit if blood cancer was as well-known as other cancers, while 62% believe the blood cancer community is being let down by a lack of awareness.  

Lack of awareness surrounding blood cancer means that; 58% of people with blood cancer agree that people are less likely to leave their diagnosis understanding what is wrong with them, with agreement ratings increasing to 77% for rarer blood cancers. 32% of those with blood cancer left their diagnosis without being told by a healthcare professional (HCP) that they have a type of blood cancer. 19% of people living with blood cancer, have never been told by a HCP that they have a type of blood cancer. 13% found out they had a type of blood cancer via a faceless source, be that the internet or a booklet. 6% found out they had a type of blood cancer through our survey.  

At the point of diagnosis, 58% of people with blood cancer were not aware of any support available. Any cancer diagnosis can cause financial hardship, but unfortunately, the data tells us that a blood cancer diagnosis is more financially costly than other types of cancer. Only 25% were aware of help with health costs (such as free prescriptions). 15% knew they were entitled to larger financial benefits (such as PIP, ESA and Carers Allowance). Only 9% knew that their blood cancer diagnosis made them eligible for one-off grants and loans to help with the extra costs cancer can cause. Only 12% knew they have legal protections under the Equality Act.

47% of people with blood cancer do not feel part of any community, despite 70% of people with blood cancer saying this is important to them. For people from Asian, black, or mixed ethnicity, finding a supportive community is even more likely to be important (75% vs 63%).

We’re calling on HCPs to use the phrase “a type of blood cancer” when describing leukaemia, myeloma, lymphoma, Myelodysplastic syndromes or Myeloproliferative neoplasms. Because 88% of people with blood cancer believe the community would benefit from this. 

How healthcare professionals can help

We’re calling on healthcare professionals to say blood cancer across four key diagnosis touchpoints:

1. The diagnosis appointment itself.
2. The follow-up letter you send to patients and their GPs.
3. The health information you give people or signpost to.
4. The follow-up appointment with a clinical nurse specialist.